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Hi Bob, and welcome. You and I have some similarities. I had sepsis that left me comatose. In the coma, the feeding they were giving me through a tube had a high sugar content in it, caused my pancreas to fail and I'm diabetic as a result. You've survived some amazing things, that's for sure.

Anyway, I hope to hear more from you! Luv,Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I appreciate each of you taking the time to write. After 13 years of living with HIV, the feeling of being out of step with the world around me is perhaps the hardest thing. In 2000 I stopped working as a Ryan White Case Manager Losing 3 clients in as many months coupled with an AIDS diagnosis sent me out on disability. Since then, I don't come across another person living with this virus in my daily life.

Oddly the time off and the painful amount of time to focus on myself turned my life around. I think my HIV infection was directly linked to my lack of investment in my own well being. I grew up in a crazy family with alcoholism and physical abuse. Craziness and being mistreated were familiar experiences. I tended to gravitate toward relationships that repeated elements of what had been familiar to me. In 1991, I got sober at 23- but that was only the beginning of healing. All my life I struggled around gender. Despite being born female, I knew inside that being a boy made more sense. Numbing out with alcohol and in crazy reationships were a way of pushing my extreme discomfort out of my consciousness.

By 2002, I was in trouble. My t-cells were 33, viral load in the millions. I felt tired all the time. Getting shingles was perhaps the most painful affliction known to human kind. Faced with a physical downslide I couldn't stop. I couldn't tolerate most medication due to the side effects and on some level just couldn't muster the resources to give a damn. Then it hit me- if I was going to die of this disease- I damn well wasn't going out as a girl!

In Oct 2002 I started gender transition from female to male. Now I live as a regular guy- albeit a short, but furry one. What I never expected was the positive affect transitioing would have on my health. All of a sudden I cared if I lived or died. Slowly I have climbed back. I found meds that worked to fully supress my virus and my t-cells are peaking out from under the furniture. Still tired, nagged by sinus/ear/chest infections- but otherwise having a ball! I am like a little boy at Christmas much of the time.

Now I am moving toward becoming a yoga teacher. Part of what helps me show up every day is a deep sense of spiritual connectedness. I am here for a purpose and plan on hanging around to be of service. The virus is what it is. Living with a catastrophic illness since the age of 28 has often been more than I thought I could bear. For today, I show up and am grateful. Somewhere in gender transition, I developed into Peter Pan.

Hello! I'm new here and my name is Rosalyn and I was diagnosed 1 month after my fiance died of AIDS 12/1999. The men on the down-low are REAL. He was one and the second man I had ever been with. The 1st man I was with used condoms. I wasn't shocked when I found out but I was hurt. I believe I contracted the infection from him in 1995 and I remember having "the flu". I had never been so sick in my life and weak! Now I know that it was not the flu.

I've been on a drug vacation since the summer of 2002. I had a great doctor who had a practice that dealt with HIV+ and AIDS patients. He was into trying new things based on his clinical experience with patients and the research that was available at the time. He wanted to see if I could go without meds(due to some side effects & toxicity issues that I started having) and see how long my body could maintain my viral load and CD4. Well it is only today that my doctor, another doctor, has decided to put me back on meds (possibly) because my CD4 dropped to 260 from a previous reading of 440. She is willing to retest to see if my CD4 has rebounded but she's not expecting that it has. So, here I go, back on meds. It's been a great vacation! Extreme stress is what I will fault for the need for meds now. I'm hoping that my CD4 is better though.

Anyway, my spouse is also HIV+ and we have been married for 2 1/2 years. I'm very glad that I stumbled across this website! I've been struggling with lots of issues including the loss of my job April 24, marital problems, health issues for my husband, financial problems, and intimacy problems. Believe it or not, things are actually not all that bad. In fact my life is where I wanted it to be minus being unemployed. As has been said before: It was the best of times and the worst of times. That's where I'm at now.

It warmed my heart to see the women's section and how you all share so many things and also the fact that you seem to try not to judge too harshly. I've been needing someone to "talk" to and my husband has not been up for it. I see that this will be an excellent way to get support, advice, reassurance, hope, guidance and laughs. I'm very glad to be here and I have lots more to share. As you see more details of my story I ask that you be gentle and not think too poorly of me. I've sabotaged so much of my own efforts that I'm amazed that my life is not more screwed up. The point is, no one can let me have it like I can, and I know ALL of the details.

Welcome, Rosalyn. Yes, please join us ladies on that link Winiroo provided. Don't worry, I've done plenty in my life, a lot of which is known here. And no one threw me into the lake of fire. Hope to hear more. Luv,Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Hi Connie, welcome to the forums. Please join us women in the "positive women" part of the forum. Especially the dating thread. It's not all about dating; it's where we ladies talk every day about our troubles, give each other support, and just gab. We're really a great bunch of ladies.

Again, welcome. Luv,Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

My name is Damon and I have been positive since 1987. I am 45 years of age and live in Marietta, GA (Atlanta suburbs). I am currently in school studying graphic design with the intent of returning to work in the not to distant future.

I am originally from Norfolk, VA - grew up in the Washington D.C. area and moved to Georgia in 1987. I hold a strong interest in graphic design, music, food, Cher, CNN, Spirituality, comedy, did I mention Cher?, and living a peaceful life. I am very happy to have found this forum and look forward to sharing information and experiences.

So very happy that summer is here at last!

Damon

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All you have been waiting for is your own permission.-- Emmanuel (Pat Rodegast)

Hello Mr. Leatherbloke.....Welcome to this forum and welcome to being a LONG TIME SUVIVOR.

"It is time, before I am 35, to prepare my will, and it worries me," quote you. Having a will and making arrangements for your death should be a source of reassurance that this is one less thing that will put stress on you. Do it.... put it away..... and move on. Right? If your life changes you can always change your will. Hope to hear more from you!

I was diagnosed 19 years ago, when I was 24. I was told to "get my arrangements in order." And I did. And I almost died a couple times (I'm talking about my heart not beating anymore). But, I lived. And now, I'm completing a bachelor's degree in psych. I do understand your frustration. I only have very few select friends I talk to about things that go on with me. I have one special friend who has seen me through all the hardships I've gone through almost since my diagnosis. So, having only a couple friends is alright. Just be happy you have them.

My parents both died within 7 months of each other. My mum died last August and my father died this March. It is extremely hard to lose a parent; I know. I don't know what happens to people after they die; no one's ever come back to tell me. But, I know they're not suffering anymore, and that gives me peace of mind (which of course takes awhile to get after their death).

I would encourage you to talk to a professional. Now, don't get all upset; I see one myself. I've had the same counselor since 1991 and he's invaluable. It might help relieve a lot of your anxiety to actually be able to sit face-to-face and talk to someone who's professionally trained to deal with emotional difficulty. Of course, we're always here. Again, I welcome you and I hope you stick around with us. Luv,Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Betty, I do actually visit a professional, but despite the thousand discussions we have and the things he tells me, I think I just wanted to share in this forum my humble opinion with people who might have gone through a similar process in their lives.

Wish you the best.

I was not discouraging you from speaking up here, please don't take it as that. I'm glad you've found us and like I said before, I hope you stay with us.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Hi All,My name is Miro. This is my first post. Nice to see you. Now I live in the UK but I was born and used to live in Poland. I am still working and wake up every day. At now I am thinking about stop HAART but my doctor advises me against it .Diagnosed Jun 1991 HIV + HEP CMeds 2000 (CD4 500 VL ?). Now: Reyataz+Kivexa+Norvir+TenofovirCure HEP C in 2002CD4 around 1100VL Undetectable sometimes around 100,

I tested positive in 1985, probably seroconverted in 1982 or 1983, had a precipitous decline in my T-cell count which led to an AIDS diagnosis in 1993, went on disability in 1995, and had my kidneys run over by Crixivan in 1999 which was followed by big-time onset of lipoatrophy.

Flirted with going back to work but found I was not up for full-time, opted for part-time. Work and I remain friends and see other people.

I gave up mind-altering substances after the cats got into the hash brownies and started taking off from the floor like helicopters, landing, and tearing around the apartment, then crashed for two days. Now instead I watch MST3K versions of social engineering films on YouTube. The effect is pretty close. ("Young Man's Fancy" is a classic.)

At my recent screening/screaming colonoscopy, the doctor said that I had a perfect colon. "Call Guinness!" I cried.

Hi I have a son 5 years old. Previous I have not a problem with any infection. Only HEP C which was cure in 2002. But now my mental health is crashed because I am afraid about future. I am working as IT specialist. I think that started treatment early is good ( I started when I have 500 CD4) but at now every day i think to stop HAART. Has somebody done it (stop HAART and come back to the same med?

I was diagnosed when I was 22, I am now 48. Both my partner of the time and myself were forced to have an HIV test as we were a same sex couple applying for a join life insurance when purchasing a house together.

After a week trying to find somewhere to get the test, we were told to go to our local hospital. When we told the people taking our blood that we were having (at that time it was called an AIDS test) the tests for, they refused to take our blood as they thought they would become infected by touching us.

In the end in full rubber and face-masked one of them took our blood. About a week later our GP phoned us to tell us the results were back but they would not tell him what they were as we did not have any counseling before the test. We then had to go back to the hospital and saw an ID doctor who talked to us about the test and they went on to tell us the we were both infected.

We were told that there was nothing they could do for us and that we would be dead within 2 years. She also to us not to tell anyone else as we would be run out of town.

Long story short, my partner died about 2 years later. I am still here, never had an HIV related illness. Have had a CD around 200 for the past god know how many years.

I have been on and off treatment for about 7 years. I hate taking them they make me ill, I have side effects all the time. Before I took them I was well and healthy, my HIV did not effect me at all.

I live in the UK with my negative partner of nearly 5 years. I work for an HIV charity.

I am looking forward to finding out more about this site. I use to be a member of PLM but have recently left the site as I did not feel that I could get the support there that I needed.

Its good to see a whole section on here for Long Term Survivors. Please feel free to drop me a line, I don't bite .... lol

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

My name is Darlene Bouse' (pronounced Boo-say). I am a 59 year old, grandmother of four, mother of three sons and the oldest sibling of seven. I live in Louisiana with my mother and youngest sister.

I was infected with the disease mid October 1989. I was being tested ever so often since 1987 due to being date raped. My last negative result was in Feb. 1989. So I decided to wait awhile to be tested again. However, on December 19th, 1989 an ex boyfriend called me and said, “I have AIDS”.

TOTAL panic hit. I was so scared. I knew nothing about HIV/AIDS back then other than that a person looses weight and dies within a couple years. I went to the health department and was tested that same day. The results took three weeks to come back due to the Christmas and New Years holidays.

It was pure torment waiting for the results. I lived in fear and cried an awful lot. The ex-boyfriend called me the day before I was to get my test results and told me that the test would come back negative because he only said he had AIDS as a joke since he didn't like the fact that I was dating again.

My oldest son took me to the clinic to get the results. After what the ex-boyfriend said, I was expecting the results to come back negative. However, when the nurse told me I was HIV+ I started crying and couldn't stop. She tried her best to comfort me. I couldn't believe what I was hearing.

I became angry at God, men in general, and life as a whole. Fear like I have never known hit me and took over my life. My son said I was white as a ghost when I came out and he knew the results were not good. I felt very much like damaged goods. I went into shock, cried for days, many times curled up in the fetal position with my son and girlfriends holding me. I am so grateful they were there because I know without a doubt I wouldn't be here today if they hadn't been. I would have committed suicide.

At first, I thought I was infected due to being raped because I honestly didn't think I could get the disease since I wasn't gay, never had a blood transfusion, nor used needles and Glen only said he had AIDS as a joke. Not once did I really hear” that someone could get it by having sex. After all, I wasn't promiscuous, heck I wasn't even crazy about sex. I had only been with four guys in my life: an ex-husband of 21 years, the guy that raped me, Glen, the ex-boyfriend of two years and the guy I was dating at the time. We had been dating for three months and even talked about being safe if our relationship ever got physical because of being with others.

However, around October 19th, after a wild night of partying, dancing and drinking we wound up in bed and had ONE wild night of sex. Due to the alcohol, we were not thinking about being safe – we just did it. I thought like so many that you can’t get this disease by just having sex once – you had to be really a sexpot. Well, I am here to tell you that it CAN happen because all it took for me was ONE time with the wrong person!

I was so much in denial that I made the docs retest me three times before I would travel to Louisiana to tell the rest of my family that I was HIV+, but all three tests came back positive just like the first one did.

I was so scared my family would disown me like others I had heard about being disowned by family and friends that had HIV/AIDS. However, to my total surprise, everyone was very supportive. They all cried with me, hugged me, and asked me why I was so scared to tell them. They ALL said I was their mother, sister, daughter, etc. and there was no way they would disown me and that they would be with me until the end. But, as time passed, my children had children of their own, and the youngest son began to pull away for fear that his children might contract the disease. To this day, the son that went with me for the results tells me that all I need to do is “Think Positive and IT will go away”. Yea, right!

For the first nine months after diagnosis, I gave up on life, quit school, and became very angry, depressed, and even suicidal. My AIDS specialist told me that I would be dead in two years if I didn’t get a change in my attitude because the stress was taking a huge toll on my immune system and if I didn’t get an attitude adjustment I would die much sooner than I needed to since I should be able to live 10-12 years before the disease would progress enough to kill me.. He went as far to say I was committing suicide and if I really wanted to end my life then I was doing a good job at it. That was my wake-up call! I realized I was not ready to die! I started attending support groups and learning all I could about the disease.

I was especially angry at men - all men didn't matter if they were straight or gay because at that time I thought I was infected due to being raped. So you can imagine how I felt when I walked into my first support group meeting and saw only men. I started to leave and thank GOD one of them asked, "now where do you think you are going Missy? I said. "anywhere but here". He asked if I was infected with HIV and when I relied "yes", he said that I really should stay and moved over and made a place for me. The guys said I was so angry and quite. I mainly just sat and listened while at the same time threw daggers at them with my eyes. Thank goodness some of the things they were saying sunk in.

I saw 14 guys in various stages of the disease laughing, joking, and professing this great love for life in spite of being infected with something that would one day kill them. I heard them say they had HIV/AIDS – BUT the disease did not have them. Before the meeting was over I knew that I wanted what they had! I am so grateful for the one that encouraged me to stay and that I didn't turn and run which was my general way to handle things.

I tried a couple AIDS trials/studies that made me get very sick. In the early ‘90s there were only three HIV/AIDS medications on the market. They all made me deathly sick so much so that I stopped all trials and did without any kind of medications until 1995.

In 1995 I had to quit working due to my disease causing major cognitive problems and my disease was progressing toward the AIDS stage faster than normally since I had a very aggressive and strong strain of the disease. Mom asked me to move back to Louisiana so that I could get reacquainted with my family and be taken care of by them. So I moved back home in 1996 to die. I sold my life insurance policy – paid for my funeral expenses, paid off bills, and do what so many people do when they get money - go to Disney World.

Shortly after moving to Louisiana, I started on the new protease inhibitors. At first, I was taking up to 40 pills a day – all at different times of the day - some with food, some without, some every four hours, some every six hours, etc. It was so hard to stay compliant but I did. I am currently on my seventh regimen. I am only taking 15 pills a day. Of those, six are for HIV, the rest are for side effects and chronic depression.

My meds cost approximately $1,800 a month. There was a time when the state of Louisiana and federal government helped. But most of the time I was paying $300-$500 a month out of pocket. My little $600 disability check didn't allow me to do much more than pay for meds and occasionally other things. Therefore, I started back to work to pay for my meds. Since I am on disability I am only able to make an additional $800 a month. If I hadn’t been living with my mom there was no way I could have made it and trust me I tried to live on my own because I really didn’t want to be self sufficient and independent.

Thank Goodness, I now have Medicare Part D and since I am working part-time, I am able to get a Medicaid supplement for $80 a month in Louisiana to help with other medical bills that Medicaid doesn’t pay for.

The side effects, at times, were terrible. I have suffered with diarrhea, insomnia, stomach problems, headaches, mood swings, liver problems, high cholesterol, developing heart problems, and the list goes on and on. Because of the side effects of all of the various meds I have been on, I have been close to death twice, had body changes, developed fibromyalgia, and many other ailments. However, I am still free of any opportunistic illnesses and I am still only HIV+ and haven’t progressed to the AIDS diagnosis.

I returned to work part time in 1999 for an AIDS agency as an administrative assistant. I changed jobs and returned to school, finally graduated with a BS in Healthcare Administration three summers ago of 56. I am only able to make $800 a month because I am on disability not because of HIV but mental problems. I have had two mental melt downs (one before HIV and one after HIV).

However, my disability payments were stopped because I had been working more than three years even though it was part-time. My boss is fantastic and carries any extra hours I may make on the side in case if I get sick or need extra help for medications, etc. so that I can keep my Medicare benefits without losing them. I do not have the energy and stamina to work a full 40 hours week.

HIV has brought up discrimination issues with people in my life at times. I have lost friends, relationships with men, doctors, and have had insurance problems because of discrimination. But my true friends have stuck by me. When I am faced with ignorant comments or questions, I respond by asking them how they would feel if I was their mother, aunt, sister, etc. and if they would still discriminate. I see ignorance about this disease as a door to educate.

Today, I am an AIDS activist and educator and cherish the moments I have spent helping make a panel for the AIDS quilt and adding it to the many others. I have pretty much accomplished everything I wanted to do in life, except publishing a book on my life before and after HIV; especially, since so many people think my life would make a great mini series but have no idea how to do so.

I speak at engagements about the virus whenever and anytime I can. I dearly enjoy putting a face on this disease because so many people, especially women, of all ages, races and color are getting infected in spite of all of the education. I have been in the newspaper, on local TV programs, in magazines, on the radio, helped start the HIV/AIDS pen pal program for a university in Orlando, Florida. Educating others and putting a face on this disease is like medicine to my soul.

Some of my proudest moments since infection are winning an Unsung Heroes Award for my volunteer work, starting a drop-in center for people living with HIV/AIDS in Galveston, TX and finally graduating at the age of 56 from college after trying three times for a BS in healthcare administration.

I give credit for living so long with this disease to the help I received from the guys in my first support group and the suggestion from my AIDS doc to get an attitude adjustment.

I came across a great Survival Kit for life while at a retreat. It helped me to cope with everything in life that happened to me and is helping me to live the rest of my life with passion in spite of life itself. (You may have heard or seen such a survival kit before; but. this is my take on it).

I honestly feel that everyone really needs a special Survival Kit such as this one! I really would like to share it with you all now. Therefore, this is MY GIFT TO ALL OF YOU!

Below are the items you will need for this survival kit: 1. A Toothpick 2 A Rubber Band 3. A Band Aid 4. A pencil5. An Eraser6. A Slice of Chewing Gum 7. A Mint 8. A Candy Kiss 9. A Tea Bag

Let me explain:

1. The toothpick is to remind me to pick out the good qualities in others and myself. My good ole grandfather used to say that if you can’t say something good about someone then you shouldn't say anything at all. He went on to say that if all you see are terrible qualities in others then what you are really seeing are the qualities that masked yours. OUCH - that one hurt.

2. The rubber band is to remind me to be flexible because things may always go the way you want it to but it will always work out in the end! I am so grateful that I was flexible. Without flexibility, I would have snapped and been in a mental institution with all of the trials and tribulations I experienced in my lifetime. However, even though I felt stretched to the limits at times, it was nice to know that I was able to bounce back.

3. The band aid is to remind me to heal my hurt feelings, as well as, others’ around me. The way I dealt with hurt feelings was to write about them while I was hurting. After doing so, I was able to then talk about them in a more sensible manner without saying things that I regretted later. I was then available to be with others when they were hurting instead of only being in my pain.

4. The pencil is to remind me to list my blessings everyday. I must admit that I was truly blessed. I was blessed that I became positive in December, 1989 instead of the early 80's. I was blessed that when I did start on HIV meds that I did not have too many problems. I was blessed that I was able to live with so much hope than there was before the new meds. I was blessed because I had family and friends that really loved me but above all else, I learned to love myself. I was blessed because I had a wealth of friends that I would have never known had it not been for being HIV positive. I was blessed because I had a family that was very supportive. This list could go on and on.

5. The eraser is to remind me that everyone makes mistakes and that you need to forgive yourself by erasing those mistakes and learning from yours. It was great to know that I was not the only one that made mistakes. Most of my life I felt that I was a mistake! However, I finally came to accept that this was not true. My God doesn't make mistakes; therefore, I was not a mistake. I was able to look back over the many mistakes I made; and, in doing so, I learned many great lessons.

6. The chewing gum is to remind me to stick with it because I can accomplish anything with God and friends onmy side. One of the things I learned was that I was not a quitter. I stuck in there no matter how much I wanted to give up. There was something deep within that would not allow me to stop. For this, I was so grateful.

7. The mint is to remind me that I am worth a mint to my family, friends and God. I am truly a priceless jewel. I am a millionaire, the child of a King with the inheritance of a mansion in heaven so no matter how poor I may be been on Earth, I am truly rich, indeed, because knowing that all of my friends and family are sheltered in the arms of my God has helped me to have nothing to fear at all but fear itself.

8. The candy kiss is to remind me that everyone needs a kiss or a hug everyday. I try my best to be there for others as much as I can while at the same time be there for myself. A hug is inexpensive and so easy to give. It is so rewarding when you can see a person light up and smile. It really doesn't hurt to spread a little sweetness to others. In doing so, you can get some kindness and sweetness in return.

9. Finally, the tea bag is to remind me to relax daily and go over my list of blessings. Wow, this simply means that it is okay to take time for myself!!! Most of my life I felt I was being selfish if I did so. I try to count my blessings daily as well as take time to just be with "me" simply because "me" is okay.

I hope you can use this survival kit as well. Adjust it to fit yourself. Hopefully, it will be a blessing to you as it was to me.

Above all, know that I am grateful to be HIV+ because I have learned to appreciate life. You see, I am not dying with this disease; I am living with this disease. Sure, I know that some day this disease may take my body, but I will never allow it to take my spirit because life IS worth living and by golly, I AM going to live it with a passion!~~~~~~~~~~~~~~~~`When I was first infected I honestly thought my life was over when in reality it had just begun!

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When you were born, you cried and the world rejoiced; live your life in such a manner that when you die, the world will cry and you will rejoice!

Thanks Peter for the welcome and to everyone else that will welcome. I miss the live online chats like the old AOL Positive LIving Room and even a couple on the Health Channel. Someone asked me the other day what did I feel I was missing in my life and I said that I miss my volunteering and chats in the HIV/AIDS rooms. I am so glad I found these boards and looking forward to meeting and chatting with all of you.

Darlenea.ka. kajnjewe

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When you were born, you cried and the world rejoiced; live your life in such a manner that when you die, the world will cry and you will rejoice!

I’ve been a member for about a year but haven’t really been involved with the group until recently. I have been HIV+ since 1987.

My former partner died early in 2003 from the usual AIDs related complications. He never accepted that life was changing and refused to be medicated (even to keep himself alive). It was very hard watching him slowly waist away and died a horrible painful death.

I didn’t expect to find someone new after his death, much less my current partner who is HIV-. We have been together for five years.

My current meds are Atripla, Gabapentin, Diovan, Triamterene, Meridia and Nexium. I’ve been undetectable for the last 10 years.

My health has been pretty good, except for arthritis and joint problems which has really slowed me down.

Hi Gregory, and welcome to the forums. I too live close by. Just down the road a little in Warsaw. Glad you found this family. You and and BT65 be careful toninght, you all are getting a lot more snow then i will be. I live just south of the snow belt Stay warm and safe tonight to everyone that is getting this snow.

Wow, so many new folks here! Welcome everyone. I'm glad that you found us here at AIDSmeds. These forums are absolutely the best place for people like us to get together. I hve been here about 2 and a half years, and really look forward to getting here a few times a week. There is no better group of people to get to know. Again, welcome.